ALSUntangled—Making Sense of Alternative ALS Treatments

The world today can seem like day after day of information overload. And with good reason. Want to find a good place for dinner? Here are 45 positive reviews of that Italian place down the street, but what about those 15 negative ones? Here are 10 reasons eggs are bad for you, and 12 reasons you should eat them every day. Which streaming service is best for you? Are you saving enough for retirement?

And we haven’t even touched on making medical decisions. For people with ALS, there are many well-regarded, well-informed medical professionals to rely on for advice on traditional treatment options. But for patients and families seeking information on alternative or “off label” treatments, it can seem like they are on their own, left to fend for themselves and to parse what is good information and what is spin. But that is not entirely true. For those wanting and willing to learn more, there is ALSUntangled.

ALSUntangled is a website created by and curated by Dr. Richard Bedlack, a neurologist at Duke University and director of the Duke ALS Clinic. Its aim is to bring a scientific approach to reviewing those alternative ALS treatments.

“Before ALSUntangled there was no standard way for patients, scientists and clinicians to engage with each other about alternative and off label treatments (AOTs). Patients were clearly interested in these, and many doctors would respond to questions about them in either a paternalistic way (“that stuff is all garbage”) or an overly autonomous one (“you can try whatever you want”),” Dr. Bedlack says. “ALSUntangled provides a structure for shared decision making. Patients can ask about the AOTs they are interested in, and then clinicians and scientists can use their training and experience to gather information about these. The whole program is designed to facilitate more informed decisions.”

Make no mistake, ALSUntangled is a lot of information, but it is well organized and presented in a non-intimidating way. To date they have published more than 50 reviews of various treatments, and have a voting system for possible topics to review that is more than 100 treatments long. And the reviews themselves are richly sourced and documented. The majority having been published in the scientific journal Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration (ALS-FTD) when completed and reviewed by the ALSUntangled team. In short, these are not fly-by-night online reviews of treatments. The ALSUntangled review team consists of more than 100 scientists and clinicians from 10 different countries.

The full reviews are available for all to view. In addition, ALSUntangled provides a quick view “Table of Evidence” that gives letter grades (A, B, C, D, F and U for “unknown”) for each treatment in five categories: Mechanism, Pre-clinical Models, Patient Care Reports, Patient Trials, and Risk to Patient.

As Dr. Bedlack notes, reviewing alternative treatments presents challenges not found when analyzing treatments that progress through more traditional channels. Information can be difficult to find, and often times the sourcing can be challenging the track down. Still, the project has proven worthwhile for the intended audience—people with ALS and their families.

“It is more difficult to get information on certain topics than I ever expected. It takes me personally around 40 hours worth of work to get one review done,” Dr. Bedlack says. “But it has been and still is worth it. These are some of the most downloaded articles in the history of the ALS-FTD journal. Some articles have more than 30,000 downloads, and collectively the series has have over 120,000 downloads.”

It would be unfair to make generalizations about the merits of the alternative treatments reviewed on ALSUntangled. As Dr. Bedlack notes, it is often difficult to find reliable information about many of these treatments, and as such there are many “U”s for unknown to be found on the Table of Evidence. Still, since starting this project in 2009 Dr. Bedlack has been impressed by the number of alternative treatments and the motivations behind them.

“I never knew there were so many AOTs, and that some would be so promising,” Dr. Bedlack says. “I was surprised to find that many of the proponents of AOTs are not ‘snake oil salesmen.’ They are true believers who really think they have something that works, but they do not have interest in or knowledge of how to prove it scientifically. Proponents do some things at the bedside that patients really like and that mainstream doctors should pay attention to. They are very optimistic, respectful of patient’s ideas and responsive to their questions.”

The future of ALSUntangled includes as many reviews as possible from the still-growing list of alternative treatments, as well as translating existing reviews into other languages, and website improvements to optimize the site for mobile viewing and a robust search function.

It cannot be said if any of the alternative treatments reviewed on ALSUntangled will be found to be reliable, replicable treatments for people with ALS. Dr. Bedlack for his part believes that continuing ongoing efforts to determine the underlying causes of ALS could lead to viable treatments in the near future, and well as the possibility of a cure for the genetic form of ALS. But for now the search continues around the globe.

It is up to each person with ALS to determine if they wish to explore alternative treatments. By Dr. Bedlack’s estimation, up to 50 percent do in some manner. For those who find those treatments an information overload, ALSUntangled at least provides a reliable starting point, one review at a time.

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